32 replies to this topic

[Lais02]

Does anybody else have a problem when you are trying to be really witty and make a good joke? It's like my body has a spike of, idk, something and sometimes I can't even finish the funny thing I'm trying to say! So annoying!

YES!!! I hate when that happens!

[Kimberly]

Did any of you ever see the episode of Cheers (OK, maybe those over 30) where Cliff Claven lost his vision when he fell in love? Season 8, Episode 4, 10/19/89: How to Marry a Mailman. "Hysterical Blindness," it was called. It is actually a real life psychiatric disorder that is called Conversion Disorder.

Well, for years, when I would lose my muscle tone when laughing really really hard, my family and I joked that it was "Hysterical Blindness." I never thought there was anything wrong with it -- I just figured I was lucky that I laughed so, so hard and had that much joy in my life.

Last summer when I had an episode of Hysterical Blindness while I was driving -- very scary -- I finally figured I should have it checked out. This was after about 13-14 years of symptoms. I didn't know what to call it, so when I got home I Googled "hysterical blindness." Didn't get me the info I needed, but gave me enough time to think of a better search -- "loss of muscle control when laughing" -- and that's when I first learned about Cataplexy and its connection to Narcolepsy. And that's when I when in to my PCP to ask for a referral to a sleep specialist.

We still call it Hysterical Blindness because most of the time it is pretty hysterical.

[Deedee]

Awww.... I heart you all, too! The feeling in Mutual and all that Fluff LOL!

Well, my catalplexy episodes are quite mild, so there's this guy that i always try to stay away from, cos i can feel my knees and body get all jelly like whenever i just c him, cos i knw he's gona make me laugh...LOL!

[ccaldwell]

OK, is this cataplexy,or something else? When I was in HighSchool, there was a boy I was infatuated with, I mean really. I joined all the clubs he was in,just to get up the courage to ask him to the Christmas Dance. The problem was, whenever I was near him, I couldn't move or even talk.
Now, I have NEVER been unable to talk - even after a severe car crash!
I mean stunned silence!
I could hear all the things I would have responded to his inacuous Hello,but I couldn't do anything! I was rooted to the spot. I could hear myself telling me to stop being silly and say hello,but I couldn't say anything. This happened over and over again,as he was a cheerful,polite person.
Is this a weird form of Cataplexy, or am i just weird?

[Damian]

YES!!! I hate when that happens!

I hate it when this happens, to a good joke, a thought from the past, sometimes the shock of something horrible happening to someone else that you may hear of on the news.
Recently over in UK there is a girl called Kay Underwood who is nicknamed the giggle girl her friends make her laugh and she falls. She has been on GMTV sub heading Giggle Girl where she drops and they class it as a cataplectic attack she does not fall in a heap and is also able to look up at her friends still laughing telling them to stop. This must be the mildest form of Cataplexy I have ever seen and within a year she is controlled and getting her Driving licence back.
One of the points I am making regarding this girl is she only mentions laughing will make her collapse and the way it is portrayed is that If people would know you had this condition when you go shopping etc, then to make you laugh which would make us collapse. I have stressed my point on the UKAN site here in the Uk as she is a member of it. But others seem to stick up for her and I quote.
" THERE IS NO SUCH THING AS BAD PUBLICITY". Im sorry to rant, but to all the people who do collapse in a heap and hurt/injure themselves on a regular basis this is not pleasent or funny. Her point is that without medication she would collapse 40 times a day!!!!!!!!!!!!!! If anyone made any of us laugh allday I'm sure some people would be into triple figures. So how would this justify the problem if it is brought on more by the so called people around her.
I am slightly hesitant to go down my local street cause I don't like the experience everytime it happens let alone someone who I don't know trying to make a joke just to make me collapse.
Ow and apparently according to her it is laughing only that causes a cataplexy attack. I think that this person needs to see what a proper attack is and what damage her views can cause other people with a neurological disorder.
You may view this if you search GMTV ,Then search videos for Giggle girl.

[Kimberly]

Hi Ccaldwell,

Well, Cataplexy is a loss of motor function in response to an emotional stimulus. AND, everyone with Narcolepsy seems to experience their symptoms differently.

I ONLY have cataplexy when I laugh super-hard (like when you worry about spitting out your drink or peeing your pants), and I can't speak during my attacks but I also slump over.

It is conceivable that it could be Cataplexy. I heard heard of people who have Cat attacks when surprised, sad, afraid, when feeling sexual, so it's conceivable that with your crazy teenage hormones going you were having mild Cat attacks around this guy.

Do you have them now in any other situations? If it's not neurological, there is a psychiatric disorder called Conversion Disorder, but that is really only considered when all neurological causes are ruled out.

K

--

OK, is this cataplexy,or something else? When I was in HighSchool, there was a boy I was infatuated with, I mean really. I joined all the clubs he was in,just to get up the courage to ask him to the Christmas Dance. The problem was, whenever I was near him, I couldn't move or even talk.
Now, I have NEVER been unable to talk - even after a severe car crash!
I mean stunned silence!
I could hear all the things I would have responded to his inacuous Hello,but I couldn't do anything! I was rooted to the spot. I could hear myself telling me to stop being silly and say hello,but I couldn't say anything. This happened over and over again,as he was a cheerful,polite person.
Is this a weird form of Cataplexy, or am i just weird?

[bagpuss]

hi i only have cataplexy im 17 and it has ruined my life! ivehad it for about 2 years now and it doesnt just happen when you laugh!! i have my cataplexy attacks mainly when im angry but it can also happen when im excited, nervous etc. i was on the understanding that people with cataplexy have 1 main trigger that sets it off. obviously with kay underwoods that main trigger is laughter but by no means is that the only thing that can set an attack off! on a general day i have 6 attacks. at the min i am finding it very hard 2 deal with. i do get a lot of support from my family and they will travel any where 2 get me seen but they cant ever no the deep feelings when it happens in public and every 1 stares at u lke your a freak. ive lost a lot of friends over this. well they cant have been friends really because they dont believe me! dont u hate that when it happens. so i found this website hopeing that some 1 will write 2 me and let me no there r others like me! my cataplexy is bad at the mo and i sleep loads because its reallydraining. does any 1 no if i will ever b able 2 drive?

WELCOME TO THE SITE .MY CATAPLEXY STARTED MILD BUT NOW ITS WORSE THAN EVER AND DIFFERENT THINGS TRIGGER IT OFF.I AM LUCKY AND HAVE GOT GOOD FRINDS AND FAMILY.IT WASNT EASY AT FIRST THEY FLAPPED AND DIDNT KNOW WHAT TO DO.WHICH REALLY GOT TO ME AND UPSET ME BUT THEY HAVE COME GOOD.YOU HAVE COME TO THE RIGHT PLACE YOU WILL GET LOTS OF HELP FROM THE GUYS ON HERE THEY ARE THE BEST,THERE IS ALWAYS SOMEONE WHO CAN HELP .
AS FOR DRIVING NEVER SAY NEVER.YOU ARE ONLY YOUNG WHO KNOWS WHATS ROUND THE CORNER. SOME OF THE GUYS ON HERE DO DRIVE AND THEY KNOW DOUBT WILL BE ABLE TO HELP YOU MORE .I USED TO BUT DONT ANYMORE AND AT FIRST I FOUND THIS SO HARD AND NEVER WENT OUT,BUT LIFE GOES ON AND I NOW RIDE MY BIKE ,WHICH LED ME TO DO A BIKE RIDE OF 140 MILES FOR NARCOLESPY AWARENESS.

[too exhausted]

Hi, Im glad you could see my clip and that it has reached this far. I have read your response to it and understand if you feel upset at how it is portrayed. I cannot help how the press have portrayed my condition and I cannot help how you have personally portrayed it. All i can say is that if you are going to insist on insulting me and claiming I do not have a severe case of the condition I would ask you to spend time with me.
I do not understand where the information of me being able to speak during an attack came from but I have never said that. Yes we could all be in triple figures but I used that as an example. I believe that the press that I have made about this condition is positive and as sufferers we should stick together as there are only a few poeple who truly understand the social and physical implications of such attacks.
As for not experiencing serious attacks I have not only nearly drowned but also collapsed in roads, banged my head on concrete etc etc. The reason for me raising awareness is so that people can benefit from knowing there are others out there. I have not only helped others but I am now in touch with other cataplectics myself which is helping me and my family and friends cope too. I am trying to change the law in England so as everyone can benefit from the drugs that help me so please do not see this as a negative thing.
Again I am sorry if I have upset anyone, I am only trying to raise awareness and I was thrown into this so quickly that I have not had time to stop and think of the implications.
Thankyou for your time
If you would like to sign my petition it is at www.gopetition.com/online/21073 this is beneficial to everyone including the person who has so kindly been quick to judge. As a cataplectic Im sure you understand how horrible it is to be quickly judged and I feel in future you should be more understanding

I thought that you were very brave to talk about your narcolepsy and cataplexy. I got N & C when I was 10 and was diagnosed 24 years later. I have read that the normal time for diagnosis is 10-15 years. More awareness is needed so doctors, neurologists etc can make a quicker diagnosis and family, friends and employers have a better understanding of our symptoms. My friend of 26 years (school friend) who I have spoke to at length about my N rang me up after watching your GMTV interveiw. Listening to a stranger (don't mean to be rude) on tv seemed to educate her about what it is like to live with N & C more than what I had done over the years.
I also read your interview with the papers and the fact that you gave hope to others by stating that at present your medication had stopped the cataplexy attacks. Also naming the sleep centre and Doctor will help pwn realise that there are sleep centres in the Uk and qualified consultants who have heard and treated this rare disease.
I am glad you mentioned about your driving as I have found that people don't want to inform the DVLA about their condition which is in the first place illegal but also highly dangerous if you can not control (medication) your sleep or cataplexy attacks. You were correct in saying that if your medication continues to work then you will get your driving licence back.
I did read that you said that cataplexy was a part of narcolepsy and that cataplexy can be triggered by strong emotions such as laughter (as in your case) but also anger, anxiety etc. Sometimes when I am reading I have to read the page several times as it doesn't sink in. I can read a page 10 times and find something new each time. It could be poor concentration, poor memory or a mirco sleep attack.
I have signed your petition and have passed it on to my family aswel. I did read yesturday that Gorden Brown is going to give free prescriptions within the next few years to all people who suffer from a long term illness. So maybe he has listened. I think you have done a good job in raising awareness and may you continue. I hope that you continue using this support board as I have myself learned a great deal about N & C and have had some good support. It does as you say help to talk to people who understand you and we should stick together.
There is a UK part of this site as obviously are health care and financial support from the government are different from the US.
Everyone has different views as we are all individuals but from what I have seen and also read what you have written you should be proud of getting N & C talked about.
On October 9th, (Thursday 9pm) Channel 4, Cutting Edge have done a documentary about narcolepsy and cataplexy.

[jackied]

In my experience with severe Cataplexy, aka, before my magic combo Xyrem and Effexor XR and when I am not on them, I find my Cataplexic Episodes to be funny pretty much only after the fact, because I don't like the feeling of being paralized or falling. However, they do make funny stories after the fact... like the time I was paralyzed for well over a half hour, and my Dad wanted to see If I could really hear when in Cataplexy, so he said, "Rachel, the secret word is Pomegranite" I did keep going in and out of cataplexy, because I found my Families's words and reactions funny. When I finally was able to gain my composure back again, I said to my Dad, " The secret word is Forbidden Frrruiiii.....", as I fell again into cataplexy. That is the best cataplexy story I have to tell. I reinacted it at a NN conference just the year before last when it was here in Dallas, TX. Mostly cataplexy is only funny when told in the context of a story. Cataplexy itself, has never really been funny to me. It was ruining my life, and I was afraid to leave.... before my Xyrem and Effexor XR combo, of course! Now my cataplexy is much more mild, unless if I ever have a lapse of my meds, usually when I run out and have trouble getting more, because our copays are high. You have to have no RX insurance to get the PPA help.

I've got a good one! I have had Narcolepsy Cataplexy syndrome for 38 yrs. As you know emotions usually cause an attack of Cataplexy. Sex is the height of your emotions, and the first time I experienced an attack during sex with my husband, just at the right moment my body went limp, legs fell, arms fell, I couldn't speak, couldn't open my eyes and my husband is saying," Jackie, Jackie ,I can't believe this , you fell asleep! Well that made me want to laugh because I wasn't sleeping and thinking funny kept me frozen longer. When I came around I tried to tell him I wasn't sleeping I heard every thing he said, but it killed the night for him too. That was the beginning of many funny stories, imagine 38 years. But you work around it!